Symptom Impact and Unmet Need in Systemic/Cutaneous Lupus Erythematosus: Results from a Patient-Centered Study Set in a Social Media Community

March 2017

Sarah A. Hall, S.Y Chen, Amy Kao, Emma Viscidi, N Payas, Heather Glassner, Eileen Peacock

systemic lupus erythematosus SLE hair loss light sensitivity skin symptom

TLDR SLE significantly affects daily life, especially through fatigue and joint pain, highlighting the need for better treatments.

This study aimed to understand the impact of symptoms and unmet needs in systemic lupus erythematosus (SLE) from the patient perspective, using a social media community. A total of 569 respondents, mostly female and aged 40-59, completed a 23-item online questionnaire. Fatigue (90%) and joint pain (74%) were the most impactful symptoms, while light sensitivity (66%) was the most significant skin symptom. Differences were noted between African Americans and whites, with hair loss and light sensitivity being the most frequent issues, respectively. The study highlighted the significant impact of SLE on daily activities and the need for treatments targeting pain and fatigue relief.

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148 citations, February 2005 in “Autoimmunity Reviews”

Most people with systemic lupus erythematosus have skin problems, and skin symptoms are often the first sign of the disease.